Forum · Patient Engagement Panel Description and Application

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[+] [deleted] +0 points · almost 3 years ago
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[-] SusanR +0 points · almost 3 years ago

This will be a wonderful opportunity for a patient with sleep apnea to help shape the future of sleep apnea research. SAPCON also will provide some future training for interested volunteers in research methods appropriate for this type of patient-driven research partnership. Would love to hear from you!

[+] [deleted] +0 points · almost 3 years ago
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[-] Ruby +0 points · over 2 years ago

I have sent in my application for the Patient Engagement panel. For the past 6 years I served on the board of directors for the WED/RLS Foundation so I know how important panels like this can be. I would love to become more involved in any research or panel discussions for sleep apnea. I applaud this organization for having the understanding that unless you actively use your patient base, then most research or information is one-sided. Thanks for this site and these opportunities!

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[-] MakeSleepAPriority +0 points · over 2 years ago

Thank you for volunteering Ruby. This site is a chance for patients to help the medical community learn and understand what is important to them. Outcomes research as I understand it helps to find the every day life things that are important to help us get the best outcome from our medical care. Said another way, outcomes research helps us learn what barriers there are and what is important to us that encourages us to do what we need to in order to get the results serious medical research says is important to be and stay healthy.

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[-] Ruby +0 points · over 2 years ago

Is there a timeline for when a decision will be made for this panel?

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[-] TedB +0 points · over 2 years ago

Hi Ruby, the Steering Committee and others are reviewing the applications now and we should be contacting potential members in the next couple weeks.

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[-] Ruby +0 points · over 2 years ago

Thank you. I am not pushing for a date, just curious!

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[-] LeeW +0 points · over 2 years ago

Hi, I tried to go to the survey monkey link and it says it's closed?

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[-] TedB +0 points · over 2 years ago

Hi Lee, thank you for your interest in the PEP. The official date for applying ended on February 15th. We may hold another round in the future. Thank you.

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